Campaign reports and briefings
Alzheimer's Society produces reports, briefings and other helpful tools as part of our work as a campaigning organisation. We also regularly carry out surveys to inform our campaigning work.
Moving forward stronger – Addressing deterioration in people with long-term conditions during the pandemic
Bringing together the views of 10 charities and allied health professional organisations, this paper shines a light on the deterioration experienced by many people with long-term conditions during the pandemic.
This increased deterioration is due to both the effects of having COVID-19 as well as the measures taken to contain the pandemic, such as ‘lockdowns’ that reduced social contact and suspended rehabilitative services.
The paper focusses on the importance of community rehabilitation services for people with long term conditions who have been affected by the pandemic. Community services, such as occupational therapists, speech and language therapists, and physiotherapists, are vital for people to manage their long- term conditions. However, during to the pandemic, many staff working in community services were often redeployed to acute services to care for COVID-19 patients.
The recommendations, targeted at both national and local bodies, will help to ensure people receive the support they need as we emerge from the pandemic.
A Future for Personalised Care
This discussion paper starts a conversation on what social care reform needs to deliver in order to meet the needs of people with dementia.
It considers evidence from legislation, guidance, standards and frameworks that define quality care or drive improvement, from le ading bodies across the social care sector. It also examines evidence from research hubs such as the Alzheimer’s Society Centres of Excellence, to understand the hallmarks of quality care, and how social care can best be delivered. It looks at personalised care, what ‘living well’ means for people with dementia, and the importance of social connections. It also considers how the social care system needs to be built to enable personalised care.
This paper provides the foundation for future work we will undertake to further explore themes of personalised care and what matters most to people affected by dementia.
From diagnosis to end of life: The lived experiences of dementia care and support
This report explores a range of issues impacting people living with dementia from diagnosis to end of life.
Using national guidance and legislation as a benchmark of what care people should expect, this report reviewed existing pathways, standards and datasets, ran focus groups and interviews with people affected by dementia, and interviewed and surveyed professionals. A recurring theme is a sense of disjointed, fragmented care.
The report provides a roadmap for action to improve dementia care from diagnosis to end of life. The recommendations, targeted at both national and local health actors, will help to streamline the dementia pathway and improve dementia care and support. It also contains best practice examples.
Worst hit: dementia during coronavirus
This report shows evidence on the disproportionate impact of COVID-19 on people affected by dementia: from the high death rate of people with dementia, to the significant cognitive decline for those who live in the community and care homes, to the rising mental health challenges for unpaid carers. It highlights how that the pandemic has exposed the gaps in the existing dementia care systems, while creating new challenges for people living with dementia and their families in and around the country.
This report offers a range of recommendations on how Alzheimer’s Society believes government can support people with dementia, mitigate against the challenges ahead and address the need for long-term social care reform.
The fog of support: an inquiry into the provision of respite care and carers assessments for people affected by dementia
This report seeks to shine a light on the support that is available for unpaid, informal carers, and the difficulties they face when trying to access respite care (or short breaks) as well as their experiences of carers assessments. It makes a series of recommendations to a range of public bodies, including local and national government which lead to better outcomes for people affected by dementia.
Women's unpaid dementia care and the impact on employment
This report, produced by Alzheimer’s Society’s International Team, explores the disproportionate impact unpaid dementia care is having on women’s ability to continue paid work. Alzheimer’s Society, via its international networks, has gathered evidence across 11 countries related to the gender dynamic of unpaid dementia care and reviewed existing research.
The report includes the experiences of women in the UK providing dementia care support to family members while balancing paid work, often alongside other care responsibilities. The report also looks at the importance of government-led care’s leave provision and the role of progressive business-led practices in providing immediate support to employees with dementia care commitments.
Projections of older people with dementia and costs of dementia care in the United Kingdom, 2019–2040
A report commissioned by Alzheimer’s Society from the Care Policy and Evaluation Centre (CPEC) at the London School of Economics and Political Science (LSE) sets out new estimates for the number of people with dementia and the cost of dementia care in the UK, in 2019, with projections to 2040.
Turning Up the Volume: unheard voices of people with dementia
A report containing the findings from Alzheimer’s Society’s largest-ever survey with people with dementia to hear their views and experiences of what daily life is like. This ambitious and innovative piece of research, conducted by Ipsos MORI, has people affected by dementia at its heart.
Through their words you’ll hear the real story of what it’s like to live with dementia, or be an unpaid carer, in England, Wales and Northern Ireland today.
The findings from this research also informed the refreshed Dementia Statements which are contained within the report. These statements reflect the things people with dementia say are essential to their quality of life - identity, care, community, carers and research. You can read about these in the report.
Dementia in rural Wales: the lived experiences
Over 17,000 people affected by dementia live in rural Wales, yet they face barriers and challenges to accessing specialist support. Our lived experiences report uncovers what support looks like for people affected.
Fix Dementia Care: Hospitals
Produced as part of our Fix Dementia Care campaign, this report looks at the quality of care people with dementia receive in hospitals throughout England. Our report looks at the problems people affected by dementia can face on admission to hospital, the care they receive throughout their stay, the issues they can face on discharge, and the disturbing trend of falls among patients with dementia. We have discovered that poor dementia care is widespread, that the quality of care varies widely between hospitals and that millions of pounds are being wasted on substandard care.
Fix Dementia Care: NHS and care home report
The second phase of our Fix Dementia Care campaign, this report looks at the experiences of people with dementia in a range of health and care settings. It uses data from a survey of nearly 300 care home managers and the voices of people with dementia, their friends and families. It sets out recommendations for the government and NHS to improve the experiences of people with dementia in care homes. We will continue to campaign to ensure they are implemented.
Fix Dementia Care: Homecare
This report marks the third phase of Fix Dementia Care campaign and looks at the experiences of people affected by dementia in a range of health and care settings. It contains the results and stories from one survey of people affected by dementia with experience of homecare, another survey of homecare workers and a Freedom of Information request to local authorities in England. It sets out recommendations for key influencers – including local and central government and regulators to – improve the experiences of people affected by dementia in receipt of homecare and Alzheimer’s Society will be campaigning to ensure they are implemented.
Dementia in rural Wales (English) and Dementia yng Nghymru gwledig (Yn Gymraeg)
Alzheimer's Society calculates that of the 45,000 people with dementia in Wales, 17,000 live in a rural area and rurality brings about an additional set of challenges for people affected by dementia. This report brings a series of interviews that highlights the challenges faced by people living with dementia in rural areas of Wales and suggests six recommendations to tackle this problem.
Dementia rarely travels alone: Living with dementia and other conditions
This report from the All Party Parliamentary Group on Dementia analyses and suggest solutions for governments and local authorities to cope with this challenge: research shows that 7 in 10 people living with dementia are also living with another medical condition.
Dementia today and tomorrow: A new deal for people with dementia and their carers
Produced in partnership with Deloitte, this report evaluates the progress made against the National Dementia Strategy, identifies the issues and challenges that remain, and outlines what good dementia care and support should look like by 2020.
Dementia 2015: Aiming Higher to Transform Lives
This is our Policy team's annual report. It provides a comprehensive summary of the key issues affecting people with dementia in England in 2015, using the Prime Minister's Challenge on Dementia as a reference point for progress. It provides a comprehensive summary of the key issues affecting people living with dementia and their carers, and highlights the changes that need to be made in order to improve their quality of life.
Diagnose or disempower?
Report examining new evidence about the experiences of people receiving a diagnosis of dementia in Wales.
The hidden cost of dementia in Wales
This report provides a detailed and robust picture of the economic impact of dementia to society in Wales.
20,000 reasons campaign manifesto
It was developed in the run up to the Northern Ireland Assembly Elections in May 2016. It focused on 5 priorities for action on dementia which would improve the lives of the 20,000 people with dementia in NI. This document makes the case for change and calls on political parties and the incoming Executive to reflect priorities for action in the developing programme for government.
Dementia UK: Second edition
This report looks at the social and economic impact of dementia in the UK, it updates data on prevalence and cost from the 2007 report.
Dementia 2014: Opportunity for change
This report provides a comprehensive summary of the key issues affecting people with dementia, explores how well they are living and details the changes that need to be made to improve their quality of life.
Northern Ireland Right to know campaign booklet
It makes the case for people with dementia to have timely diagnosis and access to post diagnosis support. It includes brief case studies demonstrating the value to people affected by dementia of having direct access to a dementia support worker from diagnosis to the end of life.
Dementia UK Northern Ireland Summary
It expands on findings from Dementia 2014- Opportunity for change report. It focuses on the specifics of Northern Ireland including the integrated health and social care system, the variable quality of care in Northern Ireland and work underway to build dementia- friendly communities. It makes 14 recommendations for action.
Building Dementia-friendly Communities: A priority for everyone
This report provides evidence and case studies on dementia-friendly communities.
Dementia 2013: The hidden voice of loneliness
This report charts progress on how well people are living with dementia since 2012. It focuses on loneliness among people with dementia.
Low expectations: Attitudes on choice, care and community for people with dementia in care homes
This report updates and builds on the home report. It presents findings on the quality of life of people with dementia in care homes.
My life until the end: Dying well with dementia
This report exposes the choices and options that exist in the UK and addresses the key issues that dementia presents at the end of life.
Dementia 2012- A national challenge
This report describes how well people are living with dementia in 2012 in England, Wales and Northern Ireland. It is the first of what will be annual reports charting progress and action on dementia.
Home truths- housing services and support for people with dementia
This report presents evidence on experiences and views of people with dementia and carers about housing and housing services.
Short changed - Protecting people with dementia from financial abuse
This report presents new evidence about the issues that people with dementia and carers face when managing their money, and recommends ways to protect them from financial abuse.
The Dementia Tax 2011
A survey with over 3,700 people with dementia and carers in 2011 asked for people's experiences and views in relation to insurance for social care. It found that just three per cent of people with dementia have long term care insurance.
Counting the cost report
This report is part of our Putting care right campaign and looks into the care and support that people with dementia receive on hospital wards.
Dementia - What every commissioner needs to know
This report provides guidance for commissioners on delivering the National Dementia Strategy for England.
22 July – Westminster Hall Debate – Support for Unpaid Carers and Carers Week
14 July - Commons Debate - Health and Care Bill Second Reading
24 June - Lords Debate - Social Care Provision in the UK and the Role of Carers
17 May – Dementia Action Week – MP Briefing
11 March - Adjournment Debate - Concussion in sport
12 January – General Debate on Covid-19
14 December – Care home visits FAQ
24 November – Medical Research Charities
7 November – Care home visits
13 October – General Debate on Covid-19
29 September - 'Worst hit: dementia during coronavirus' report summary
23 March - Coronavirus bill briefing
All Party Parliamentary Group reports
Hidden No More: Dementia and Disability
This report from the All Party Parliamentary Group on Dementia shines a spotlight on dementia as a disability. It seeks to enable people with dementia to assert their rights to services and for their rights as citizens to be treated fairly and equally.
Dementia rarely travels alone: Living with dementia and other conditions
This inquiry brought to light the scale of difficulty faced by people living with dementia and other health conditions. Despite significant progress to deliver integrated care services and support, it found that the health and social system frequently treated conditions in isolation so that people with dementia and other health conditions received disjointed, substandard care and treatment.
The £20 billion question - Inquiry into improving lives through cost effective dementia services
The report found that cost effective dementia services could play a key role in supporting health and social care services deliver savings required of them by the government.
Campaign with us
Find out more about what we're campaigning on, including Fix Dementia Care, and how you can support our work.